Half the Energy, Twice the Spunk

Well it's been a while since I've updated - mostly because there has been nothing to update.
I finished my final plasmapheresis treatment today, they have gone well - boring - which is good.
Unfortunately I am not doing any better. My gut issues have progressed to the point of requiring morphine to manage the pain, and my blood pressure and heart rate issues have continued to worsen.

At this point we are now in 'wait and see' mode. The meds I am taking (azathioprine) to reign in my immune system can apparently take months to work sometimes, so they are telling me not to give up all hope that we can get things back in order again.

Because we are now simply waiting for things to change (be it for better or worse) I am pushing for a discharge. I can wait and see at home just as well.

Unfortunately it's not easy to organize all the stuff that must be organized to get a person home on IV nutrition... home nursing, bloodwork, hospital visits, central line care, pain management, and the day to day business of producing and delivering the IV nutrition itself is a logistical nightmare and I'm sure it will take some time to set up.

I will meet with the 'team' tommorrow to discuss the process and I am hopeful I can be home by next week. Or at the very least be at a hospital closer to home.

Either way will be an improvement on the current situation (I'm in the city and the rest of my family is an hour away.).


I'm trying not to get discouraged, but it's hard. I miss my family, I miss my life. Tommorrow will be better.

K